My experience of living with DID: the NHS

I have been a victim both of childhood abuse and abuses within the mental health system of the NHS. As someone said to me recently, the fact that I was abused as a child is appalling, but to be reabused again as an adult by the people who were supposed to be caring for me is equally unacceptable. This is a story that doesn’t often get told, because too often as survivors we feel that it must have been our fault. I am slowly recognising that none of what happened to me was my fault, and gradually things are improving for me, also in part thanks to the NHS. So this is hopefully a balance of the good and the bad within our mental health system as I have experienced it. I am grateful that parts of the NHS are becoming increasingly educated about dissociative disorders, which means that we are receiving better levels of care, but that should not minimise the harm done to myself and others through the system itself. I’ll begin in 2005 when I decided to end my life.

There were a number of things that led up to that moment when I’d just had enough. It all seemed so logical to me at the time: I did the washing-up, put the bins out, and then I hanged myself from the banister. The next thing I remember is being in the medical assessment unit at the hospital with people sitting around my bed. They were from the Crisis Team (a term I’d never previously heard of) and they wanted to talk to me about going somewhere for a “rest.” I was so tired and felt so unwell that I really thought a “rest” would be lovely. It was nearly 3.00 am, these nice people were trying to help me and they seemed to be in a hurry, so I agreed to go with them.They took me in their car and we drove down a long, tree-lined lane. We arrived at a building that looked like a hotel. It was a red-brick building with lots of windows; there was a big porch with a glass front and a well-tended garden, and a man with jangling keys and a plastic badge opened the doors. I was too numbed down to realise where I was going until I walked onto my ward and some crazy-behaving people came out of the smoking room. One of them was laughing uncontrollably and the other had her trousers down and was waving her arms in the air. I was horrified to be in a psychiatric hospital: I had seen films about them, where you lost your privacy and all your rights. I really thought that they locked you in your room and injected you with sedatives forever, so I wanted to leave immediately. But they definitely weren’t about to open the doors, no matter how much fuss I made.

I was an inpatient for eight soulless months. During that time, I didn’t have much idea what was going on inside me. All I knew was that I felt totally out-of-control and I was losing a lot of time. The staff at the hospital began to witness a lot of bizarre behaviour: I would sleep under the desk in my room, or I would sit on the floor rocking and sucking my thumb, and then not remember having done it. At first they decided that I was sleepwalking, and then later I was given a diagnosis of Post Traumatic Stress Disorder (PTSD). I was given medication which sedated me into a fog. I had to queue up in the medication room – a nurse gave me the pills in a little pot and another one stood next to me and watched me swallow them, sometimes asking to see inside my mouth. Occasionally I would get away with hiding the tablets under my tongue and then spit them into the toilet later on, but mostly I would just do as I was told and swallow them.

On the whole, the nurses were nice to me: actually too nice. My keyworker was in charge of my ward and she took a particular liking to me. She let me share her Chinese takeaway in the office and I even used to go to her house with her. On Christmas Eve she came into my room with some presents. She said I could open one of them and save the rest for Christmas Day. I opened it and it was a see-through bra. She told me to try it on. I was scared, but I did as she said.

The next day I was allowed to go to my Nan’s house for Christmas dinner, so I took my presents from my keyworker with me. When I opened them in front of my family, I saw there was a lacy body undergarment and some knickers, including one pair with bloodstains inside. I didn’t know what to say. Then my keyworker called my phone. I didn’t want to answer it, so my sister did instead. The nurse thought it was me and started declaring her undying love for me and saying that we should run away together. My sister was horrified, but she didn’t know what to do about it and I didn’t want her to feel responsible for me or worry, so I just said she must be drunk as it’s Christmas and she was probably messing about.

Later that day I had to return to the hospital and I really didn’t want to go, but I knew that they would call the police if I didn’t return, so I went. I was so unhappy. A few weeks later I was again allowed to have day-leave. In a dissociative state that I still don’t remember I bought 200 paracetamol and then went back to the hospital and swallowed them all. My roommate found a suicide note and alerted the staff: I woke up to all the alarms going off in the hospital. They found the empty packets and I was taken to the general hospital where I was given drips and medicine to make me sick. I was there for two days.

When I went back to the psychiatric hospital, the nurse who had bought me the presents climbed into my bed early one morning. She was caught, and suspended, but it was only temporary. She returned at a later date and continued working there. It’s so shocking – everyone in the unit is so vulnerable and the very people who are supposed to be looking after us are violating our boundaries. It’s terribly confusing, and it didn’t just happen to me. I went into the laundry room once to see my keyworker with her hands around a man’s throat, and she was telling him to go ahead and kill himself. She was a bully and the other staff didn’t seem to be concerned about her, or to want to stop her, so they colluded with it as well.

Not long after my keyworker was found in bed with me, the other staff became aware of my self-harm. I had secretly self-harmed for many years because of the past abuse, but it had escalated because of the situation I was now in, feeling trapped and re-abused. The psychiatrist decided to change my diagnosis to Emotionally Unstable Personality Disorder, what is also known as Borderline Personality Disorder. I was assigned a Care Coordinator whom I’d met before: I’d seen her a few times at my local surgery after my GP referred me, fearing that I was spinning out of control. She made very little effort to understand me and luckily I didn’t see her for very long.

Eventually I was discharged, but I didn’t go home as I had split up with my boyfriend, with whom I’d been living for five years, so I couldn’t go back to my house. Instead I was put into supported housing. There were eight flats, a communal lounge and the office where two support staff worked. Mostly I really liked living there and I got along very well with the lady in charge, J. She became my friend over the two years that I lived there but she also broke many boundaries. She went out drinking with me, frequently came into my flat, came to my birthday party and also used to come to my Nan’s house with me. It became a very intense relationship and she wanted me to call her ‘Mummy J’. It felt weird and unsettling. I know now that I was looking for a mother figure in my life but I certainly didn’t want to call anyone Mummy. She also had a problem with her temper. One day I was coming down the stairs and she kicked me in the shins because the payphone at the bottom of the stairs was not working and I had been laughing about it. Fortunately there was a witness to this, so she was sent on an ‘anger management’ course. It was another example of a professional who was in charge of my care being unsafe to be around.

My moods were often up and down and one day when they were particularly down, ‘Mummy J’ decided to give me notice to leave. I was really upset by this sudden decision and all that it meant in terms of having to find somewhere else to live. She then decided to give me back all the tablets they held in the office, as well as the knives they had taken away, to help prevent my self-harm. Needless to say I overdosed and cut my wrists badly, the worst I had ever done before. The Crisis Team picked up the pieces with me and eventually I moved out into my own flat to live independently. It could certainly have been handled more sensitively and with more planning and care. Not long afterwards, one of my closest friends committed suicide. This had a deep impact on me, and I was in shock for quite some time. But I managed to carry on with the College course I was doing in Art, and dedicated an exhibition to my friend.

I have had a very up-and-down experience of treatment within the NHS in the community. I was offered Art Therapy and I tried to open up and paint the things that I was remembering, but I couldn’t really get it to work. I took my parrot to one session, which I thought would be funny, but the therapist was not amused, especially when it proceeded to poo on the blackboard! I also had a short course of CBT (Cognitive Behaviour Therapy) while in hospital and I started some DBT (Dialectical Behaviour Therapy) but that ended because the therapist left, and there was nothing else offered instead.

For seven years I had a Consultant Psychiatrist who didn’t seem to know what to do with me apart from to give me ever-increasing dosages of medication. He was never very interested in anything that I had to say, preferring to talk rather than to listen. During one appointment he talked at length about a one-legged footballer, and I’m sure there was supposed to be a point to the story, but I didn’t grasp it! I had several short spells in hospital, mainly due to self-harm that I was unaware of, and my psychiatrist didn’t know what to do about it at all. He didn’t understand dissociation in the slightest, and never once asked what had happened to me in the past that might explain my current behaviours and difficulties. He seemed to become very deskilled and lost hope, even telling me on more than one occasion that he was surprised that I was still alive! That wasn’t the most encouraging thing I’d ever heard. When towards the end I tried talking to him about DID, he just shrugged and dismissed it as an American fad. There was absolutely no connection with him, or any attempt on his part to understand me or to help me understand myself. Another psychiatrist that I briefly saw thought my dissociation was epilepsy.

It was in the midst of that hopelessness that I turned to drugs and alcohol. For a while it numbed everything down and I didn’t care about a thing. But actually my drive to get better was too strong and before long I decided that I’d had enough. I went to a place which provided help with alcohol and drug issues. They offered me counselling with a lady whom I began to be able to trust. I opened up to her and started to talk about my childhood. When the treatment centre wasn’t able to fund sessions with her any more, I continued to see her privately and this went on for a further two years. Her approach, which may or may not have been helpful at the time, was to work only with me as the adult and not my other parts. She was too strict for me to feel able to relax in the room but through counselling with her I did come to understand what was ‘wrong’ with me, and began to understand about dissociation. But at the same time it meant that a lot of my feelings were beginning to come out, to the extent that my friends were noticing a change and getting quite worried about me. It was so hard starting to look at what caused my symptoms. As the nature of my difficulties became clear, my counsellor felt that she wasn’t qualified to work with me so she decided to end our sessions. I was devastated by this and it left me feeling very suicidal for quite a long time.

My Care Co-ordinator, Emma, had started seeing me for a while before this and I still see her today. At first I didn’t trust her but she has stuck with me and learned a lot about dissociative disorders and I have a lot of respect for her now. She has never hurt me or crossed any boundaries. She eventually helped me to start seeing a Clinical Psychologist, Jackie, and I have been having therapy with her ever since. She is absolutely brilliant at her job and I feel much safer with her. I no longer drink or take drugs, and I also have a new Consultant Psychiatrist who is also really good at her job and listens to me. I now have a formal diagnosis of Dissociative Identity Disorder and everyone in my NHS team is working together to help me manage better and to reduce my medication. At one point I was taking nine different forms of mind-altering medications, including 30mg a day of diazepam on top of antidepressants, mood stabilisers, anti-psychotics as well as sleeping tablets. As they are being reduced, for the first time in years I feel able to think more clearly and this is helping me to engage more profitably in therapy.

The Crisis Team have been very good to me, and very helpful when my Care Co-ordinator has referred me to them. They took me on for six months and I got on with the doctor on their team really well. He made a huge effort to get to know me, even coming out to my flat, which helped a lot. He never crossed any boundaries and he really cared about me and what I had to say. The best thing about him was that he very early on decided that hospital was not the right place for me to be and he wanted to keep me out of there. It was a shame when he left the job as he made a positive difference to me. So I had a good experience of the Crisis Team when it was a case of planned appointments, but not such a good experience – ironically – when it was more about ‘crisis’. Sometimes it’s been impossible to get through to them, especially at night. One evening not long ago I spent two hours trying to reach them on the phone. It’s supposed to be an emergency phone line and yet, despite leaving two messages, no one returned my calls or responded to my requests. There needs to be much more support for when we are in crisis – the lack of response just makes your feelings of low self-worth and abandonment even worse at an already difficult time.

One of the main problems that I have encountered in the NHS is the lack of knowledge around dissociative disorders. The attitude of my first psychiatrist is not atypical, and nor is his ignorance. From speaking to medical students at University, I have realised that teaching about dissociation is not at all mainstream. And yet it would be so helpful if staff and doctors were to have more knowledge about the effects of trauma on a person. I believe that childhood experiences are the root cause of many of the symptoms that people are struggling with in psychiatric hospital, and so many of the people I have met in hospital have had dissociative symptoms. Many of the psychiatrists who have treated me have been interested only in medicating my symptoms to blot them out, rather than dealing with the underlying cause.

Recently I was told that I was the only person that the Crisis Team have worked with who has DID. I simply cannot believe that this is true. What seems more likely is that many other people that they are working with are being misdiagnosed, as I was. Before I worked with Jackie it felt like nobody understood me and that is a very lonely place to be. Jackie has made a huge difference to me but the hardest thing now is knowing that I only have a limited amount of time to do this work with her, because the NHS in my area only provides short-term therapy and expects specific results within certain timescales. Nowadays, having met other people with DID especially through the PODS workshops and realising that I’m not alone, I feel sad that I spent 7 years in the NHS being not only misdiagnosed but also re-abused. I can understand why a lot of people do their best to look for therapy privately because it certainly seems a lot safer compared to my experiences.

I passionately want to do something about the lack of knowledge and the abuses within the NHS system, so I am now giving talks about DID to junior doctors as well as talking about my experiences at induction days for new staff. I really want things to change, not just for me but for other people as well. Staff need up-to-date understanding about dissociative disorders, and their link to childhood trauma so that they can put our symptoms such as our behaviours in context. They also need to be willing to start treating us sensitively and empathically rather than punitively and as if we are just “attention seeking” all the time.

There also needs to be suitable and appropriate long-term psychotherapy available for us to help us deal with our underlying dissociated trauma, rather than just being ‘revolving door’ patients receiving dissociative care! And perhaps above all, treatment and care on the NHS should be safe, with staff respecting our boundaries and modelling a new way of relating to people rather than further violating our boundaries in a way that replicates our abuse. These are the kinds of things I talk about when I have the opportunity to speak to NHS staff. Anything I can do to raise awareness is helpful, and it also enables me to feel less powerless.

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